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Part 2 – Explaining The Vital Difference Between Social Needs vs Healthcare Needs

Before you read this blog, we recommend that you read, “Part 1. Explaining The Vital Difference Between Social Needs and Healthcare Needs.”

There are a number of different tools available to measure frailty in the elderly, including the Clinical Frailty Scale (CFS) or electronic Frailty Index (eFI) – simple scoring tools used to measure the health status of older individuals (aged 65+). The CFS serves as a proxy measure to identify ageing and those elderly who are the most vulnerable and are at highest risk of poor outcomes such as falls, deteriorating mobility, disability, admission to hospital, or the need for long-term care.

The CFS essentially describes people in nine categories, grading them as to frailty, with simple visual descriptions. Those who are very fit are at one end of the scale, going all the way through the spectrum to those at the other extreme, who are very severely frail and terminally ill. A score of 0 indicates no frailty; a score of 1-3 indicates frailty risk; and a score of 4 or greater indicates frailty. See the CFS scale below:

(Click Image for larger version)

Although not intended as a tool to determine eligibility for CHC Funding, hopefully, the CFS will help you visualise what sort of care needs are likely to fall into the social needs category (and be funded by the Local Authority and subjected to means-testing) and what sort are more likely to be healthcare needs and be assessed for NHS Continuing Healthcare Funding (provided free of charge by the NHS).

  • Categories 1 & 2 – have no care needs
  • Category 3 to 6 as examples of purely social care needs and would fall under the remit of the Local Authority
  • Category 7 & 8 could potentially fall into either social care or healthcare needs, or a combination of both, and therefore an assessment to determine eligibility for CHC funded care should be done.
  • Category 8 could also be CHC, as a person is totally dependent. Again, we would recommend an assessment for CHC ought to be carried out.
  • Category 9 – may be eligible for Fast Track Funding and an assessment for CHC ought to be carried out.

Read our blog: How To Fast Track The Continuing Healthcare Funding Process

Families, carers and professionals alike must be able to distinguish between social and healthcare needs, as the outcome will make a huge difference as to who ends up paying for your relative’s care. The issue, however, is not straightforward, as those who have been through the CHC assessment process will invariably testify! Especially, as the dividing lines between social vs healthcare needs are often blurred depending on which perspective you are looking at it from.

Most families will genuinely believe that their relative’s care needs are severe and justifies CHC Funding in full by the NHS. Their argument is frequently based on the premise that, without care in place, their relative will simply not be able to survive alone and will die. However, although a truism, that would equally apply to the whole population, and is not how the ‘primary health needs test’ is applied under the National Framework. As we said in Part 1, much depends on the nature, intensity, complexity and unpredictability of those needs and the skilled interventions required to monitor and administer them.

In Part 1, we gave examples of social needs. Here’s an example of some familiar healthcare needs:

Behaviour

Being restive with care interventions (including his food, medication and personal care) and with episodes of physical aggression, hitting staff and constantly shouting for help and requiring staff to provide frequent reassurance.

Cognition

Suffering from a significant cognitive impairment, difficulties word finding, a poor short term memory and problems with recognition, no awareness of needs and staff being required to anticipate all care needs to ensure that needs were managed as far as possible.

Psychological and Emotional Needs

Frequently shouting out for help and requiring staff to provide reassurance, but not responding to that reassurance. Experiencing low moods, feeling lonely and needing regular bed rest due to pain, poor appetite and lack of motivation, resulting in large weight loss.

Communication

Suffering from dysphasia and unable to communicate needs at times and being unable to initiate any input, assistance or expression of need, requiring all care needs to be anticipated by staff.

Mobility

At high risk of falls and being nursed in bed due to immobility and significant pressure sores to sacrum and heel, causing restlessness at times due to pain and cot sides to be used to minimise the risk of falling out of bed, needing frequent checks throughout the night.

Eating and Drinking

High risk of aspiration and requiring assistance from staff with feeding and drinking, suffering from dysphagia and requiring a mashed diet and thickened fluids, suffering from recurrent choking episodes when swallowing, poor fluid intake due to lethargic state, and suffering significant weight loss; paracetamol changed to suspension form.

Incontinence (Elimination)

Doubly incontinent and requiring staff to manage all continence needs, being prone to constipation and requiring regular laxatives to help manage this.

Skin

Excruciating Grade 4 sacral sore (non-responsive to treatment) and a grade 3 sore to heel area, requiring ongoing nursing treatment by registered general nurses and a tissue viability nurse specialist. The severity of the pressure sore conditions necessitated careful repositioning by staff due to the risk of further damage to skin and pain caused.

Medication

Staff required to administer and monitor the effectiveness of medication and closely monitor and administer pain relief for pressure sore pain, experiencing problems swallowing and paracetamol was changed to suspension form, prescribed Butrans patches.

If you are still struggling to understand the difference between what needs are social needs and what are healthcare needs, here’s a really good analogy to help you:

Analogy

We regularly hear comments that elderly relatives:

“couldn’t do anything for themselves”

“had to go into 24 hour care”

“Social Services insisted they couldn’t carry on living in their own home”

“my Mother/Father was doubly incontinent” etc.

None of these factors are necessarily an indicator of CHC eligibility.

If you think of a two or three year old child:-

  • They are unable to prepare their own food and drinks to ensure adequate dietary and fluid intake.  They need a responsible adult to prepare food and drinks and possibly to feed them as well.
  • Some may still be ‘incontinent’ ie still wearing nappies either during the night or day and night, or having occasional accidents which need cleaning up.
  • Unable to protect their own skin integrity – if they are still in nappies, they need an adult to clean, dry and change them after wet or dirty nappies and apply moisturising barrier creams.
  • Mobility – at risk of falls, unsteady on their feet, tendency to climb and no awareness of risks!
  • Not always able to reliably communicate their needs – how many of us have had to use a process of elimination to determine what may be troubling a crying baby or toddler? Even when they can communicate, it can still be difficult to understand what they are trying to tell you.
  • Psychological and Emotional Needs – they may be upset or crying but unable to tell you why.
  • Cognition – very few two or three year olds have the ability to assess risk, make appropriate decisions as to their day to day care and manage their own care needs.  They rely on responsible parents or others to provide a safe environment for them and ensure that they are protected from danger, abuse or neglect.
  • Behaviour – this is an interesting one!  Ever heard of the ‘terrible twos’ or ‘terrible threes’?
  • Medication – can a two year old child administer good old Calpol? Can they always tell you when they are in pain or where that pain is?

Anyone with young children or grandchildren will be able to identify with all of the above points. Sadly, as our parents and grandparents age, many revert to more childlike behaviours and tendencies.  But does that mean that they are necessarily eligible for NHS Continuing Healthcare Funding?

Would you consider that your two year old child or grandchild should be eligible for CHC Funding or would you describe them as having a Primary Health Need?

Probably not – you would accept that they need a responsible parent, grandparent or other adult to take care of them and provide a safe environment with provision of all their day to day care needs. You would certainly accept that they could not live on their own or be left in the house alone.  All of that is social type care – the child wouldn’t be eligible for CHC Funding and they certainly don’t have a primary health need simply because they need care by a responsible adult of the type listed above.

The same applies to elderly relatives. Not all needs are healthcare needs, even though they may well be as a result of a progressive disease, such as Alzheimer’s Disease/Dementia. Remember that eligibility is not based on a diagnosed illness or disease. It is about the level of healthcare needs as compared to social care needs – for example once an elderly relative starts to lose weight because they are refusing sufficient diet, that presents risks of malnutrition. If they develop nasty pressure sores because of their immobility and double incontinence, that becomes a health need. Once an elderly relative develops physically aggressive behaviour which makes care delivery difficult or impossible, that can become a health need, and so on.

Conclusion

Identifying the point at which an individual has a ‘primary health need’ is difficult and is usually based on many factors all combining to create intense, complex and unpredictable health needs. These factors are known as the 4 Key Indicators or Characteristics. An individual’s needs have to be assessed in the whole, taking a holistic approach, to determine whether they are eligible for CHC Funding. Once you have understood whether the needs fall into the category of healthcare needs, you need to really understand how the NHS will assess those needs when factoring in the 4 Key Indicators. That is a whole separate topic!!

For further information on the subject, read our blogs:

Understanding the four key indicators

‘Take a holistic approach to improve your chances of getting CHC Funding’

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Part 1. Explaining The Vital Difference Between Social Needs vs Healthcare Needs

If your relative has a pending assessment or review for NHS Continuing Healthcare Funding, then you must read this article.

Many families undergoing an assessment to see whether their spouse or relative is eligible for NHS Continuing Healthcare Funding (or ‘CHC’) are often left bewildered when they learn that they did not meet the eligibility criteria for CHC, or are astounded and outraged when their existing funding is withdrawn.

In many cases, families will be left distraught and frustrated by the whole challenging process, but much of this anguish could have been avoided had they clearly understood the critical difference between social needs and healthcare needs.

What is NHS Continuing Healthcare Funding?

‘CHC’ as it is commonly known by professionals, is a package of services which is arranged and funded by the NHS through its local Clinical Commissioning Groups (CCGs) for individuals who have complex ongoing ‘primary health care needs’. More about this later…

The National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (revised October 2018) states that health care needs relate to the “treatment, control, management or prevention of a disease, illness, injury or disability, and the care or after-care of a person with these needs (whether or not to the tasks involved have to be carried out by a health professional)“.

Important points you must know about CHC:

1.CHC is available if you are over 18 to meet needs that have arisen as a result of a disability, accident or illness.

2.CHC is not dependent on having a particular illness, diagnosis, condition or disease.

3.CHC is ‘free at the point of delivery’ i.e. when you need it as stated in paragraph 35 on page 14 of the National Framework.

4.CHC covers 100% of the care fees payable, regardless of the individual’s wealth, savings and assets. CHC is free!

5.CHC is payable regardless of who provides care or the place where the care is provided. So, for example, care can be provided in a care or nursing home, hospice, other care facility, or even in the person’s own home.

6.If you are resident in a care home, CHC covers all the care fees, including the cost of accommodation.

7.If you are receiving full-time care at home, CHC covers nursing care plus personal care, such as, bathing, dressing and any additional household cost directly related to care needs.

8.CHC is not means-tested, so wealth should never be a consideration.

In short: CHC is all about putting health needs first, not where you live or how much money you have.

Who gets CHC?

Everyone who receives full-time care and has healthcare needs should be assessed for CHC Funding. However, the public are generally unaware that this free NHS funding even exists! Instead, they are told that they have to pay for their own care and are subjected to means–testing.

To be eligible for CHC Funding, you have to have a ‘primary health need’ which means that the principal reason for care is due to health needs, not social needs.

The phrase, ‘primary health need’ is an expression included in the National Framework for NHS Continuing Healthcare. It is not a legal term, but a description to help identify the boundary between social needs and healthcare needs, and to determine the level and type of care required to meet those assessed care needs.

The distinction is critical in determining which side of the dividing line you fall onto, and consequently, who has to pay for your care.

This is the important bit…

  • healthcare needs are provided free of charge by the NHS
  • social care needs are provided by the Local Authority (Social Services) and are means–tested

However, in practice, the dividing line can become blurred, as NHS and Local Authorities may battle to suggest that your relative’s care needs fall into the other body’s remit and responsibility for payment.

The landmark Court of Appeal decision in the Pamela Coughlan case (1999), helped to clarify this boundary line and set out the ‘primary health needs test’. The Judgment set out what care could lawfully provide be provided by the Local Authority and what care fell beyond their remit and was the responsibility of the NHS.

Following the Coughlan decision, a Local Authority can only provide nursing care if it is merely:

  • incidental or ancillary to the provision of the accommodation which a Local Authority is under a duty to provide; and
  • of a nature which it can be expected that an authority whose primary responsibility is to provide social services, can be expected to provide.

As Pamela Coughlan’s healthcare needs were greater than those which the Local Authority could be expected to provide, she was eligible for NHS Continuing Healthcare and entitled to a free package of care.

The key is to look at the individual’s day-to-day nursing and healthcare needs, and consider when taken as a whole, whether they are above and beyond the expectation of the what a Local Authority can lawfully provide. You do this in conjunction with the 4 Key Indicators (or characteristics) – Nature, Intensity, Complexity and Unpredictability of the individual’s needs. Any one, or any combination, of these four Indicators of need, might mean that the individual has a primary health need, and is therefore eligible for CHC free-funded care.

The dividing line between social and health care needs in the Coughlan judgment and the ‘primary health needs’ approach was subsequently incorporated into the Care Act 2014. The Care Act 2014 has been included into the revised 2018 edition of the National Framework for NHS Continuing Healthcare and reinforces the existing boundaries and limits of what care is the responsibility of a Local Authority, and what is the responsibility of the NHS. The Care Act makes it clear that if an individual may be eligible for CHC, they should be referred to the local Clinical Commissioning Group for an assessment.

However, despite this assistance, unfortunately, the boundary demarcation is still not clear enough, and that creates uncertainty and room for the NHS to avoid paying CHC.

Some examples of social care needs to help you…

Social care is often thought of as needing help with things like:

  • your well-being
  • the activities of daily living
  • helping to maintain independence and social interaction
  • avoiding risks in vulnerable situations

Common examples of social care needs might include: help with getting in and out of bed, getting dressed and washed, toileting, meal preparation and eating, and assistance when going out shopping or visiting family and friends.

As an example, take an individual who has suffered a partial one-sided stroke. They may be perfectly able to communicate their needs reliably, have full cognition with no behavioural issues, have no breathing problems or incontinence needs, and enjoy a perfectly healthy well-balanced diet. However, they may require additional assistance with dressing, personal hygiene and their mobility, and need someone to accompany them at all times when going out of the home to minimise the risk of falling. This example of social needs may be available through the Local Authority (Social Services) – unless you have enough money, wherein you will have to pay for the care yourself.

Understanding this key difference between social and healthcare needs, could save you the stress and trouble of needlessly pursuing a CHC assessment for your relative if their needs simply aren’t high enough to meet the eligibility criteria for CHC Funding, and in fact, are plainly social needs (and therefore subject to means–testing).

Equally, the distinction is important because, if your relative clearly has a primary health need, but you fail to recognise the difference, they could be lead down the wrong track and end up self-funding their care out of private savings, and even being forced to sell their home, quite unnecessarily!

Joint Packages of Care

CHC includes personal and social care needs which might otherwise be met by Social Services.

In some situations, package of care can be provided jointly by both the NHS and the Local Authority.

If your relative’s care needs are equally funded by the NHS and the Local Authority, then there is an argument to say that their needs are sufficiently high to merit CHC Funding in full. However, your argument is strengthened if the majority of the joint care package is being funded by the NHS. For example, if the NHS are funding 75% and the Local Authority are funding the other 25%. If the majority of care needs are being paid for by the NHS, then arguably that demonstrates an overriding primary health need, and as such, all the funding should be paid for in full by the NHS, and not subjected to means-testing by the Local Authority.

For more information, read our blogs:

Are You Getting A Joint Package Of Care?

What is a joint package of care?

Summary:

Coughlan, The Care Act 2014 and the National Framework combined, draw an important distinction between social needs and healthcare needs.

Remember: It’s all about understanding who pays!

Recognising the difference is vital, as it determines which body is responsible for paying for your relative’s care, or whether they will have to contribute to the cost of their own care.

When you put the maths into practice, knowing the difference could mean paying care home fees of £937* a week / £45,000 a year (*Which.co.uk) or nothing at all!

The difficulty is that often the dividing lines are between social and healthcare needs are blurred, and it is not always obvious which side of the line you fall onto. If in doubt, then you must request an assessment for CHC Funding to ascertain whether your relative has a primary healthcare need.

If the NHS have tried to push your relative down the Local Authority means-tested route or self-funding, despite having obvious healthcare needs, then share your experience with others and explain how you dealt with the situation.

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NHS Continuing Healthcare Funding Put On Hold

With the outbreak of coronavirus it is not surprising that assessments and appeals for NHS Continuing Healthcare Funding are being put on hold, and those Clinical Commissioning Groups which are still operating in this area are likely to stop shortly.

The impact is already having a dramatic effect throughout the country.

Those with family and friends currently in hospital awaiting discharge to a care facility are at risk of catching Covid–19.

Care homes awaiting the transfer of new residents will equally be anxious to ensure that they do not import the virus with them.

Most care homes need an influx of new residents to make it commercially viable to remain open.

Some care homes have already closed their doors and will not admit new residents or allow visitors to enter in case of infection.

In the event of an imminent escalation of preventative measures and an enforced lockdown, nurses, carers and auxiliary staff in care homes may also face restricted access to their patients. Just as carers employed to look after patients living at home may be forced to reduce their support, leaving the most vulnerable and needy in society isolated and at risk.

The elderly, frail and those with serious underlying medical conditions at risk with chronic (long-term) respiratory diseases, such as asthma, chronic obstructive pulmonary disease (COPD), emphysema or bronchitis, chronic heart failure, chronic kidney disease, chronic liver disease (such as hepatitis), diabetes, chronic neurological conditions such as Parkinson’s disease, motor neurone disease, multiple sclerosis or cerebral palsy, or generally have a weakened immune system, are all considered at highest risk.

In the majority of cases, assessments for NHS Continuing Healthcare Funding start with an initial Checklist screening tool to determine whether the individual should move forward onto a full assessment carried out by a Multi-Disciplinary Team. However, if the individual cannot even be assessed for the Checklist due to the risk of the virus spreading, then many assessments will be cancelled or deferred. The Government cannot say when it will be safe to engage in social interaction again, but the current thinking is that it is going to be many months, rather than weeks. Some commentators consider it could be another 12 to 18 months yet, whilst the vulnerable, and those who have or may be in the throes of contracting coronavirus, need to remain in isolation.

Similarly, if Multi-Disciplinary Team meetings (MDT) cannot proceed either, then individuals will not know whether they are eligible for NHS Continuing Healthcare Funding or not. In the meantime, they may be required to fund their care out of private means and use up hard-earned savings. These inevitable delays will cause severe financial hardship for families as they try to find sufficient funds to pay for their relative’s ongoing care.

In terms of Local Resolution Panel appeals following the outcome of a negative MDT meeting, or further appeal to NHS England, these too will be cancelled and adjourned, causing a dramatic financial knock-on effect for those have been forced to fund their relative’s care pending the outcome of an appeal. Who knows when the hearings will be reinstated? Those at the back of the queue could face a very lengthy wait and years of anxiety, before their appeal is heard and the outcome decided.

Most CCGs are already unable to adhere to the timeframes for conducting an MDT. Appeals to a Local Resolution Panel and NHS England have generally been taking considerably longer to get a Panel hearing date, and then there are generally inordinate delays in the outcome decision being communicated to families. Now that MDTs and appeal panels are being cancelled throughout the country, families will have to dig even deeper to find additional funds to pay for their relative’s care during the intervening period.  We do not know how care homes will manage the situation or how sympathetic they will be, given that they, too, have fixed overheads and staff wages to pay in order to keep their residents well–looked after in a safe and caring environment.

We certainly are currently living in unprecedented and challenging times.

The Government’s daily warnings clearly mean staying indoors, avoiding public and social gatherings, and staying clear social contact. The inevitable impact will mean that individuals going through the assessment or appeal process, and who may be eligible for CHC funding, will have to wait until the CCG’s ‘doors’ reopen again. The CHC assessment and appeal process as set out in the National Framework for NHS Continuing Healthcare Funding and NHS–funded Nursing Care already contains flaws and, unfortunately, this unprecedented and unforeseen crisis will only fuel the public’s anxiety. Read our recent blog: Is the National Framework Still Working Effectively?

Not only will people be refused entry into the care home to check on whether their spouse, relative or friend are getting adequate care and attention and that all their daily needs are being met, but they may be saddled with the additional worry of how they are going to continue funding their care if the whole NHS CHC assessment process grinds to a rapidly approaching halt. Given the current state of uncertainty and stretched NHS resources, some with an existing CHC package of care will undoubtedly benefit from having their annual reviews postponed and avoid the potential risk that funding could be withdrawn. But, sadly for others, it could mean that they are stuck with a current CHC care package that is inadequate to meet their increasing healthcare needs. We shall have to wait and see how CCGs manage the crisis.

We do not know at present when the CCGs will be fully open for business again, but in the meantime, there are things that you can be doing in these difficult times:

  1. Start to prepare your thoughts on paper for the MDT.
  2. Collate your evidence and prepare your written submissions for an appeal.
  3. Read our helpful guide “How To Get The NHS To Pay For Care” – available as an ebook/PDF to download or paperback.
  4. Read around the subject and look at the many blogs written on the Care To Be Different. Browse through our website or use the search box if you are looking for a specific topic or issue.
  5. Visit our Facebook page and read what others have said about their CHC experiences and learn from their issues.
  6. Seek available guidance if you need it – email your enquiry to us at enquiries@caretobedifferent.co.uk
  7. If you can’t find what you’re looking for on our website, use our Advice Helpline Service for more detailed and lengthier queries, and book a telephone appointment to speak directly to one of our specialist nurse advisors.
  8. If you need professional advice visit our one-to-one page.
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Is the National Framework still working effectively?

Prior to 2007, each Strategic Health Authority had its own criteria for establishing eligibility for NHS healthcare funding – a free package of care provided by the NHS for an individual’s healthcare needs.

The outcome created a national ‘postcode lottery’ with confusion, uncertainty and inconsistency as to who would be eligible for free funded NHS care and who wouldn’t. Your chances of success largely depended on the area where you lived (hence ‘postcode lottery’), and how each individual local Health Authority applied its own policies when determining the outcome of an application for NHS funding.

The system was fragmented and the outcomes as to who may get funding varied disparately throughout the country.

In 2007, the Department of Health issued a National Framework for NHS Continuing Healthcare. Its aim was to promote a nationwide common tool (or framework), with greater clarity and consistency, and using clear eligibility criteria, designed to help all those administering NHS healthcare assessments, or involved in the decision-making process or the resolution of disputes.

The 2007 National Framework was updated again in 2009 and rebranded as “The national framework for NHS continuing healthcare and NHS-funded nursing care.” Further updates followed in November 2012 and more recently in October 2018. The theory being that more people should be able to access free NHS funding for their longer-term healthcare needs.

According to the Executive Summary, the 2018 National Framework is designed to:

• set out the principles and processes of NHS Continuing Healthcare and NHS-funded Nursing Care (‘CHC Funding’);
• give practical guidance to support staff delivering NHS Continuing Healthcare;
• provide processes for determining whether an individual has a ‘primary health need’ and is eligible for free NHS-funded care;
• re-establish the principal that the assessment process is intended to be ‘person–centric’ – with the individual being assessed at the heart of a fair, consistent and transparent process free from discrimination.

The latest version of the National Framework (2018) aims to provide even greater clarity for NHS assessors, professionals and individuals alike who are involved in the assessment process for CHC Funding, and provide fair and constant access to NHS funding throughout the country. But does it?

In practice, the correct application of the Framework is really only as good as the NHS representatives who have been trained in its use and application.

Here are 6 important areas where the 2018 National Framework has been updated:

1. Assessments for CHC out of hospital.

It is now preferable, wherever possible, for the initial Checklist screening assessment process to be deferred and to take place after discharge, away from the acute hospital setting.

The good: The aim is to get a more reliable and accurate picture of the patient’s longer-term needs, back in their own care setting, rather than in an acute hospital ward. Moving the assessment away from hospital has the added advantage of reducing ‘bed-blocking’.

The bad: Once out of the hospital setting, families will have to wait until their relative is settled into their care environment – whether in their own home, care or nursing home – before the initial Checklist screening assessment takes place. Unless you can secure an interim package of free care upon discharge pending the Checklist, this time delay could result in an individual funding their care unnecessarily for weeks on end.

For more information, read our blog:

What’s new in 2018 NHS National Framework for CHC? Are you getting an interim care package?

2. Early Screening out of the process.

Additional advice is given in the National Framework as to the circumstances when an individual can be screened out of the assessment process early on. For example, if it is obvious that they have no healthcare needs and are clearly ineligible for CHC; or else, their needs are so obvious that they should move straight on to a full assessment; or have a rapidly deteriorating condition and may be entering a terminal phase, then the Fast Track Pathway Tool should be used instead to ensure CHC Funding is in place within 48 hours.

The good: If used correctly, it will save NHS resources and wasting time on cases where the individual clearly isn’t eligible for CHC Funding by screening them out early on; or alternatively, accelerate the process for those who are likely to be eligible, or else direct them down the Fast Track Pathway if at an end of life situation.

The bad: Unfortunately, it can mean that some individuals are subjected to a miscarriage of justice and are screened out prematurely or incorrectly, and so, may miss out on their entitlement to CHC Funding.

For more information, read our blog: Understanding the Checklist Assessment

3. Clarifying the purpose of a 3 month review and annual reviews thereafter, once CHC Funding has been awarded.

The National Framework provides that the package of care should be reviewed regularly by the local NHS Clinical Commissioning Group (CCG) to ensure that it is still adequate to meet your relative’s healthcare needs.

Paragraph 189 of the National Framework states that such reviews should be carried out within 3 months of the eligibility decision to grant NHS Continuing Healthcare Funding, and then at least every 12 months thereafter.

The good: An individual’s healthcare needs can vary over time and are more likely to increase as they become more frail. The intended purpose of these regular reviews is primarily to check the appropriateness of the current care package in place and to make sure that the care plans and arrangements are still adequate to meet the individual’s needs. The review assumes that CHC in place will continue, and so, is designed to reduce the number of unnecessary full reassessments.

The bad: Eligibility for CHC should only be reviewed afresh with a new full assessment carried out by a Multi-Disciplinary Team if the CCG can demonstrate that the needs have changed significantly. Unfortunately, in practice, these ‘reviews’ can be hijacked by CCGs and converted into a full reassessment, catching family representatives unaware.

Annual reviews create high anxiety for families, even if their relative has severe needs. The reason is that, contrary to the National Framework, these reviews present the CCG with an opportunity to reconsider needs afresh and withdraw existing funding (and thereby save funds), rather than merely looking whether the existing care package is sufficient to meet the individual’s assessed healthcare needs. Unsurprisingly, as many families will testify, CHC Funding can be removed upon such reassessments, leaving them with the tortuous task of complaining and mounting a formal appeal, whilst having to privately fund their relative’s care in the intervening period.

4. Introducing new principles for Local Resolution appeals.

If your relative has been rejected for CHC Funding at a full assessment carried out by a Multi-Disciplinary Team (MDT), the revised National Framework sets out a revised process for challenging decisions and launching an appeal.

The good: A new 2 tier approach at Local CCG level has been formalised to allow families to challenge the negative outcome of a MDT Assessment decision in circumstances where CHC Funding has been refused or withdrawn.

This new approach enhances the core principles of the National Framework of the ‘person-centric’ approach and gives families the opportunity to hear first-hand from a CCG representative why their relative did not meet the eligibility criteria for CHC Funding.

The first stage is optional and is an informal two-way discussion with the CCG’s representative. It is intended to address any concerns the family have, promote transparency and information sharing, both as to the scores allocated to the DST and MDT’s rationale when reaching their decision to refuse CHC Funding. If dissatisfied, you still have the option to move to stage 2 and proceed down the road of a formal appeal to a Local Resolution Meeting (LRM).

The bad: In reality, the new Framework merely enshrines the former informal practice of CCGs, inviting families to meet so that they could explain why CHC Funding was refused (or withdrawn). It was, and still is, just a ‘talking shop’, enabling CCGs to tick a box and say that have tried to engage with the family in compliance with the Framework’s person-centred approach. Some find the stage 1 informal review process cathartic. Particularly, if you realise that your relative just isn’t eligible for CHC. But, for those who believe that the MDT’S outcome is flawed or blatantly wrong, the review meeting only adds to their existing frustration and is a waste of time and energy. The reason being, is that the CCG’s representative doesn’t have the necessary clout or authority to unilaterally overturn the MDT’s decision there and then – however wrong you or they may feel it is. Although, on the positive they can make recommendations to review it, and if overturned, would save the CCG the time and cost of preparing for an appeal.

Read our blog: Rejected for CHC Funding? Part 1: How To Appeal The MDT Decision

5. Providing clearer guidance on key areas such as the Fast Track Pathway Tool.

The Fast Track Pathway Tool is an accelerated and abbreviated screening process designed to identify those individuals who are sadly nearing end of life and have a rapidly deteriorating condition.

The good: Using the Fast Track Pathway Tool ensures that individuals who may be entering a terminal phase are assessed quickly, and if positive, provided with CHC funded care within 48 hours of their assessment. This gives their family security and the comfort of knowing that their relative’s care will be paid for by the NHS in the remaining weeks of their life.

The bad: Sadly, what is becoming more common practice is that the Fast Track Pathway Tool is being misused by the NHS as a quick fix to unblock hospital beds. Patients are being awarded Fast Track funding too readily, just to get them out of hospital more quickly and move them into a care setting. Many families do not realise (or are not told) that Fast Track will be reassessed again if their relative survives 3 months from when CHC Funding is awarded. The risk, of course, is that CHC Funding could be withdrawn upon review, leaving families with the daunting prospect of having to find private funds immediately to pay for their relative’s care.

Let’s Talk Fast Track! Vital NHS Funding Withdrawn After 3 Months – The Latest NHS Controversy

Shortcut the assessment process – use the Fast Track Pathway to get immediate Continuing Healthcare Funding within 48 hours

6. Inclusion of the Care Act 2014 – ‘the primary health need test’.

The National Framework 2018 has been updated to include the implementation of the Care Act 2014 which came into force in 2014. The Care Act provides guidance to Local Authorities and councils in relation to social care and helps people to know what care and support is available for their own well-being and to make their lives better.

The distinction between social needs and healthcare needs is critical as it can have significant financial consequences as to who is responsible for providing and paying for your care:

Social care is provided by the Local Authority and is means-tested. Therefore, an individual may have to pay a financial contribution towards the cost of their care (in part or in full) if their wealth, savings and assets exceed the current threshold of £23,500.

NHS Continuing Healthcare (CHC) is paid for by the NHS and is ‘free at the point of delivery’ where there is a ‘primary health need’ ie the main reason for care is due to healthcare needs as opposed to social needs. CHC is payable regardless of wealth or where the care takes place.

The good: The Care Act does not change NHS Continuing Healthcare and places a clear duty on the health and social care authorities to carry out proper assessments for NHS Continuing Healthcare.

Section 9 of the Care Act makes it clear that when a Local Authority carries out a ‘needs assessment’ and it appears that the individual may be eligible for CHC, they should be referred to their local CCG for a CHC assessment.

Section 22 of the Care Act reinforces the landmark Court of Appeal decision in the Pamela Coughlan case (1999) and places it firmly within the National Framework. In Coughlan, the court found that her nursing care needs were greater than those which her Local Authority could be expected to provide and should therefore have been paid in full by the NHS (ie free of charge) because the overarching primary need for care was a health need, not a social need  – the ‘primary health needs’ principle.

The Care Act places a limit on the care that a Local Authority can lawfully provide and reaffirms the boundaries of what funded care falls under their remit, and what care is the responsibility of the NHS.

Following Coughlan, a Local Authority can only provide nursing care if it is merely:

i) incidental or ancillary to the provision of the accommodation which a Local Authority is under a duty to provide; and

ii) of a nature which it can be expected that an authority whose primary responsibility is to provide social services can be expected to provide.

The bad: The Care Act and the National Framework do not clarify the test for ‘incidental and ancillary’ above. In practice, this means that the boundary lines can become blurred as to whether the primary reason for care is for health needs or for social care needs. This lack of clarity frequently leads to arguments as to which organisation is responsible for funding care.

Some CCGs selectively ignore the primary health needs test set out in the Care Act (and Coughlan before it). So, beware of conversations asking about your relative’s healthcare needs and how they intend to pay for their care. This is wrong. Remember – CHC Funding is never about wealth, but only health! Don’t let CCGs try and push your relative down the Local Authority assessment route (and means-testing) in an effort to save money and avoid their responsibilities for providing healthcare.

How relevant is the Coughlan Decision Today?

Our comment:

On balance, most of the updated changes to the revised National Framework in 2018 are to the good and are undoubtedly intended to be helpful to NHS assessors and individuals involved in the assessment process.

Although much of the content and concepts remain broadly the same as the previous 2012 Framework, the structure and cosmetic layout appears more logical and user friendly. But, whether the Framework is adhered to and applied consistently, or at all, is an entirely different matter!

The unresolved problem is that the National Framework is still open to subjective interpretation, and that in turn leads to the CHC eligibility criteria being applied inconsistently throughout the country and some very odd decision-making – both for and against individuals seeking NHS funding.

Since its introduction in 2007, the Framework has not eradicated the postcode lottery, and so, remains open to abuse by some CCGs, who either ignore it or selectively apply its guidance to suit their own objectives and financial budgeting constraints.

If the National Framework and its guidance are so clear, and the system is working so effectively, then why is the assessment and appeal process so challenging for families? Why are there so many complaints to CCGs about abuse of process, delays, incompetence, flawed assessments, perverse outcomes, hostile and adversarial assessments, and a general lack of transparency – contrary to the Framework’s guidance?

What’s new in 2018 NHS National Framework for CHC? Are you getting an interim care package?

The revised National Framework – what impact will the changes have?

Are Continuing Healthcare National Framework guidelines the same as the law?

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What to do if you’ve been excluded from the MDT Assessment?

Sandra Pike contacted us for help on the subject when she was not allowed to attend an MDT. Here’s what she asked us below:

Sandra’s situation

“Please could anyone advise me: I am very concerned that my local authority/CCG are blatantly and shockingly breaking National Framework guidelines. When a person is assessed for CHC Funding – this is what happens…

  • The nurse assessor only meets with patient and family rep to discuss/complete DST for which comments can be added to by the family.
  • The Assessor then goes away to an MDT meeting held at a later date with a social worker.
  • They then decide on the outcome.
  • The Social worker, in most cases would have NEVER met, let alone assessed the patient.
  • I myself have always been told (I have written and taped evidence to back this up) that, We are NOT allowed to attend – it is for professionals only!!!!
  • Last year after taking advice on here [CTBD] I refused to allow the MDT to take place without us. We declared that it would be null and void without us there – they then backed down and allowed us to attend – but sent all of the top guns to try to intimidate us.
  • I have carried out a FOI [Freedom of Information] request to this CCG asking, “How many MDTs take/took place with a family representative also present at the MDT?” – They first of all gave me false/incorrect info and published this online stating 100% attend. I complained – ended up going to the ICO.
  • The CCG then backed down and sent me an apology and said that they had made a mistake/misinterpreted my question. I am including their revised response [below]. It’s shocking!!! I have plenty of evidence written and taped showing that family reps are always told, “Not allowed to attend!”

The CCG published their response stating that the information provided is accurate as of 6 February 2020, and this is what they wrote:

“2019/20 – 2 (Family members/patient representatives are usually present at the MDT assessment of eligibility process only. The MDT meeting that follows is usually made up professionals only. However on 1 occasion in 2019/20, a request from family members/representatives to attend the MDT meeting was agreed and on another occasion one family member was invited to an MDT.”

We are grateful to Sandra for sharing her own experience and for wanting to spread the word as to this appalling state of affairs – evidencing that so few family members are being encouraged to participate in the assessment process.

What’s the issue?

The Multi-Disciplinary Team assessment (or ‘MDT’ for short) is a formal assessment to determine whether an individual is eligible for NHS Continuing Healthcare Funding – a free funded package of care – if they have a ‘primary healthcare need’ (ie the primary need for care is for health reasons, as opposed to social reasons).

Read our blog: Paying care home fees or paying for full-time care at home? You could be entitled to NHS Continuing Healthcare.

Getting a positive MDT recommendation for CHC Funding can result in the NHS paying for ALL of your relative’s assessed healthcare needs, including their accommodation. Based on figures provided by Which?, the average person may be paying around £45,000 a year in care fees. In certain areas, we estimate this cost could even be as much as £75,000 to £100,000 a year. Quite staggering sums!

According to paragraph 20 of the National Framework for NHS Continuing Healthcare Funding and NHS–funded Nursing Care (revised October 2018), the whole assessment process is designed “to ensure that the needs of individuals who might have a primary health need are properly assessed and addressed. These individuals are, by definition, some of the most vulnerable in our society and it is vital that systems deliver a person-centred approach to the wide variety of situations that NHS Continuing Healthcare encompasses. Strong system leadership is therefore critical to the successful implementation of this National Framework.”

So, why are family representatives being excluded from essential MDT assessments and being told they’re not allowed to attend?

Here’s what to do…

If you’ve been told you can’t attend the MDT, then ask why, and make a note of the answer!

This is a blatant abuse of process and you must complain.

The obvious implication is that the CCG assessors may have something to hide, or gain, by you not being there.

If you, or your relative’s representative, are not in attendance at the MDT, how can you be sure that the assessment has been carried out diligently, fairly and robustly? The NHS’s ‘person-centric’ approach is supposed to promote complete transparency.

Being excluded from the assessment process is clearly contrary to the core values and principles set out in the National Framework. It’s essence is to include the individual being assessed and their (family) representatives.

There is no restriction on who can act and represent your relative or act as their advocate.

According to the National Framework, the term ‘representative’ is intended to “include any friend, unpaid carer or family member who is supporting the individual in the process as well as anyone acting in a more formal capacity (e.g. welfare deputy or power of attorney, or an organisation representing the individual).”

In short, an individual can appoint anyone they chose to represent them, including a legally or medically qualified advocate such as a nurse, lawyer, barrister, their GP or other medical consultant etc. But, professionally qualified advocates will have no more or less standing than any other lay advocate.

Read our helpful blogs below if you’ve been told you can’t have an advocate:

Can The MDT Panel Refuse To Proceed If I Have An Advocate?

Attending an Assessment or Independent Review Appeal?

We’ve also copied some key paragraphs from the National Framework below so you can quote them to the CCG if this situation happens to you:

67. Individuals being assessed for NHS Continuing Healthcare are frequently facing significant changes in their life and therefore a positive experience of the assessment process is crucial. The process of assessment of eligibility and decision-making should be person-centred. This means placing the individual at the heart of the assessment and care-planning process.”

68. There are many elements to a person-centred approach, including:

a) ensuring that the individual and/or their representative is fully and directly involved in the assessment process;

b) taking full account of the individual’s own views and wishes, ensuring that their perspective is incorporated in the assessment process;

 f) keeping the individual (and/or their representative) fully informed.

70. Assessments of eligibility for NHS Continuing Healthcare and NHS-funded Nursing Care should be organised so that the individual being assessed and their representative understand the process and receive advice and information that will maximise their ability to participate in the process in an informed way. Decisions and rationales that relate to eligibility should be transparent from the outset for individuals, carers, family and staff alike (refer to paragraphs 100, 159 – 161).

Also read Practice Guidance note 4 on page 98 of the National Framework for more information.

Conclusion

The crux of the National Framework is to involve the patient and their representatives throughout the assessment process. Therefore, by right, you should be invited to attend the MDT and not excluded.

We strongly recommend that you get involved in the assessment process. Otherwise, you won’t know how what went on and may forfeit the opportunity to have your say in support of your relative’s application for CHC funding.

When reviewing the comments posted on our Facebook page, or in response to our numerous blogs on the Care To Be Different website, you will learn from the shared experiences of other contributors who have faced MDT panels, and will clearly recognise why it’s vital to attend the MDT assessment.

Don’t miss this opportunity to give your input to the MDT panel, and be there to watch, oversee and contribute to the process.

If you don’t feel confident, or think you have the wherewithal to take on the MDT panel, then get help. But don’t leave it to the last minute! For personal help, visit our one-to-one page for one-stop advice and specialist advocacy representation at MDTs and appeals.

If you have been excluded from an MDT, give us the CCG’s reasons. Share your experience with others and leave a comment below…

Here are some other helpful blogs on the subject:

Learning valuable lessons prior to your MDT Assessment and how to avoid pitfalls

Part 1 – Revealing Insights From A Continuing Healthcare Nurse Advocate…

PART 2 – Revealing Insights From A Continuing Healthcare Nurse Advocate…

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Dementia social care funding crisis! Why are families sending their relatives with Dementia to Thailand for care?

On the 17th of February 2020 the Daily Telegraph led with a front page headline article, “Dementia patients dumped in hospitals“.

The article told of the closure of numerous day care centres and care services across the country, forcing an extra 100,000 Dementia patients to seek care in Accident and Emergency each year.

Sir Simon Stevens, Head of the NHS, warned that, “pressures in social care were now putting real strain on families, carers and hospitals”.

Social care is funded by the Local Authority and relates to the activities of daily living, such as assisting someone to maintain social interaction and their independence or preventing them from coming to harm in vulnerable situations. For example, getting help with washing, dressing, mobility, meal preparation, feeding and toileting etc. Social care activities are designed to provide service users and patients with interaction, company and stimulation and to help them lead a more independent life. Drop-in centres, lunch clubs and meals-on-wheels are just some of the typical services that some day centres may provide.

Chronic underfunding of social care has led to the closure of an increasing number of day care centres and related services throughout the country.  According to the Daily Telegraph, this has resulted in Dementia sufferers attending A&E in increasing numbers, with some apparently remaining on hospital wards for many months (and in some cases even up to a year) – due to a lack of support and funding to help them maintain their social independence.

The lack of social care funding is inevitably putting a huge strain on the individual sufferers, their family, friends and carers. As families and the care system can’t cope, it is easier to refer their relative to A & E to seek immediate help. Time in hospital also provides some respite for families and carers alike. The buck then passes from the Local Authority (Social Services) to the NHS, exerting even more pressure on their already stretched resources.

We learn from the Daily Telegraph’s investigation that this situation is being fuelled by cuts to existing social services supposedly in place to help the elderly, frail and vulnerable in society to live in a safer environment with dignity.

Some cuts to social care services in different parts of the country are more drastic than others – with the worst cuts reported in the Southwest, where 7 centres offering social activities have reportedly closed in the past three years, compared to only one in the North-West.

It is well documented from all the recent media coverage, even preceding the recent General Election, that social care is grossly underfunded – particularly for Dementia sufferers. The Daily Mail ran an extensive campaign focussing on the lack of social care funding. Read our blog:  Daily Mail’s Dementia Campaign – A missed opportunity.

The Government is committed to pumping vast sums of money into relieving the pressure on the social care system, care homes and homecare. The Prime Minister has pledged to “fix the social care crisis once and for all”.  Sir Simon Stevens is reported to have said: “For the record – high number of people living with dementia and their families, health and social care are essentially two sides of the same coin. That’s why the Government welcome commitment to a long – term plan for social care – to ease the pressure on home – care and care homes, which is putting real strain on families, carers, and hospitals – is so important“.

As an aside, we don’t share the Minister’s view that social care and health care are flip sides of the same coin. They are different, both in how their respective services are carried out and how they are funded. Healthcare is provided by the NHS and is ‘free at the point of need’.  Whereas social care is provided by the Local Authority and is means-tested, so you may end up paying for some or all of your social care. There is often a fine dividing line between social vs healthcare needs which causes confusion even amongst professionals. The importance of this distinction determines who pays for care.

We anticipate that the social care funding crisis is going to take many years to resolve, and it’s not going to be a quick fix nor simply a question of throwing money at the problem (although that would be a good start!). We believe that a root and branch review of the social care funding system is required. Better care facilities and improved living environments, together with better trained staff and higher quality standards will undoubtedly help. Dementia sufferers shouldn’t have to go to hospital to receive care or be housed in a safe environment. They and their families should be able to access care and social interaction within the community. Hospital admission may be a convenient outlet for those in desperate need, but surely this is a huge waste of valuable NHS resources and can only exacerbate ‘bed blocking’.

So, if the UK system is failing Dementia sufferers, where else can they turn?

Consider this alternative. Ever thought of providing your relative with care abroad?

There was an interesting article recently in The Guardian, “Families sending relatives with dementia to Thailand for care.”

The Guardian’s article suggests that there are an estimated 850,000 people living with Dementia in the UK, with local authority residential care costing up to £700 a week and private care costing around £1000 a week. Staffing levels in state and private care facilities are thought to be on the ratio of around 1:6 i.e. one carer for six patients/residents in a care facility. Some patients, may of course, have higher levels of need than others, and monopolise a carer’s time; meaning that five other residents who may be equally needy are not getting the same attention they deserve or require. Many care facilities are understaffed and will be forced to cut corners where they can to save funds and survive. After all, they are running a business. However, this could be to the detriment of your relative who may be left alone, isolated or unattended to for long periods of time. If family members or friends don’t visit their relative regularly, they can’t really be sure what is happening at the care home on a day-to-day basis. Look beyond the lovely grounds and surroundings, fittings, furniture, glossy brochures and attractive websites!

Substandard or unsuitable care in the UK is motivating a wave of ‘medical migration’ abroad.

There now seems to be a growing trend of families moving their relative abroad to get better care at a more affordable cost (referred to in the article as “medical tourism”).

The Guardian’s article focusses on care in Thailand, where “1:1 around -the-clock residential care in a care facility with fully qualified staff – in award – winning facilities that look like four star hotels – costs around £750 a week.” That is similar to the lower end of the scale cost of a care home in some parts of the country (and less than half the cost of some care homes in London and more affluent areas). But, the apparent advantage of a move to Thailand, is that your relative can get one-to-one personal 24-hour care. On the face of it, that seems highly attractive both financially and more importantly, from the comfort of knowing that your relative will be receiving excellent individual round-the-clock care for their needs. Unless radical reforms are made to increase social care funding, this new trend is likely to gather momentum over time and even be extended to other countries, perhaps nearer to home. ‘Medical migrants’ could become more common as families seek alternative more affordable (and better) options for their relative’s care needs.

The Guardian records Peter Brown’s story who moved to Thailand from the UK and founded care resort Chiang Mai, six years ago after becoming unhappy with the quality of care his mother was receiving in her British care home. He told The Guardian, “I don’t believe there are any relatives in the world who want to export their mother and father to a different country…What they want is care for their mother and father they are entitled to and unfortunately, the local city is incapable of giving them. They don’t want their mother and father locked away for 23 hours a day, sat in a corridor for one hour and put back into their room, so they start to look around for alternative options. There are plenty of options in a separate country, so how can you blame them for taking it.”

For many families, there will, of course, be a dilemma between seeking the best available care for their relative in the most comfortable and affordable surroundings on the one hand – versus the emotional upset caused by having a close relative living so far away, and not being in ‘control’ of their care, plus the distress to your relative of being exported to new and unfamiliar surroundings, with unfamiliar dietary options. Plus, families considering this move need to factor in the practicalities. You can’t simply pop in several times a day or on your way to or from work to check on your relative and to make sure that they are OK and receiving the standard of care you expect; that they’ve been washed, having proper nutritional intake and fluids, are fully clothed and not left sitting or lying in soiled clothes all day due to neglect.

In some cases, exporting your relative into care abroad may also mean families having to move abroad to be with them, or else spending longer periods of time abroad, say a month or  two at a time, several times a year (which also incurs travelling and accommodation expenses).

Whilst some families may be absolutely delighted with the care and attention their relative is getting in their chosen care home in the UK, we suspect that there are many more families who are very unhappy. We believe that this is largely due to the fact that most care homes are grossly underfunded, which in turn means cutting corners and reduced staffing levels or compensating by recruiting low quality staff. We have read some damning Care Quality Commission (CQC) reports requiring immediate improvement. Some care facilities are not fit for purpose. Common complaints from families include poor hygiene standards, dirty rooms, urine stained floors, and being in need of urgent refurbishment – a distant cry from the outdated sales brochure or online glamorous pictures taken some years ago.

But, for families like Peter Brown, to even contemplate the upheaval of moving a relative to the other side of the world to find excellent care, illustrates how our social care system is failing families and the standards in care facilities need improvement and radical reform.

Conclusion

The move to Thailand, or indeed elsewhere abroad, may well suit some families and have its attractions if the reported care is such good value for money, but for the vast majority of British citizens, it will be ‘life as usual’ and daily complaints about the poor state of social care in the country.

However, over time more families may take the view that the  emotional upset and overall financial investment of moving a relative abroad to get better care, is worth the risk for the sake of their relative’s wellbeing, and to enable them to enjoy a higher of standard of living and care, but at a more affordable price.

What is your experience of the care standards your relative is receiving?

In what circumstances would you consider moving your relative to a care home abroad?

We recommend these helpful articles for further reading around the subject:

Paying care home fees or paying for full-time care at home? You could be entitled to NHS Continuing Healthcare.

My Dad Has Dementia – So Will He Automatically Qualify For CHC Funding

Your mum has ‘social’ needs, so she won’t get CHC funding…

So will you be self-funding?

What’s the difference between a care home and a nursing home?
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Relief as 6 Month Time Limit To Appeal MDT Decision Is Reinstated

A glaring omission in the latest version of the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (revised October 2018) has allowed Clinical Commissioning Groups (CCGs) around the country to take unfair advantage of individuals seeking to appeal a decision from a Multi-Disciplinary Team assessment (MDT).

Under the previous NHS National Framework, revised in November 2012, individuals were allowed a 6 month window to appeal an MDT decision.

So, if the CCG rejected your relative’s application for NHS Continuing Healthcare Funding after a full MDT assessment, or else, if existing funding in place was withdrawn following reassessment, 6 months was usually sufficient time to evaluate the outcome decision to refuse/withdraw CHC funding and lodge an appeal, if appropriate.

Although 6 months sounds a long time, in reality, there is a lot of material to collate and review.

You will need to obtain all relevant care home notes and records, GP and hospital records, any other treating therapist’s notes or other notes and records by those involved in your relative’s daily care (as may be relevant) and the CCG’s case file.

You will need to collate all these records, organise, paginate and assess them in minute detail, line by line, and consider them in conjunction with the Decision Support Tool used by the CCG when assessing your relative’s eligibility for NHS Continuing Healthcare Funding.

You will need to carefully look at each of the 12 Care Domains in turn, comparing the entries provided in the DST to check whether the entries recorded have been fully and acurately quoted (and not partially quoted/misquoted or simply summarised) to ensure there is no missing information which would paint a different picture of your relative’s healthcare needs. Inevitably, there will be lots of entries or information in the care home and medical records which have not been included in the CCG’s DST! Incorrect or missing information could dramatically reduce your relative’s chances of getting NHS Continuing Healthcare Funding.

So, for example, if under the Care Domain, “Medication” the NPD may only list a handful of entries as to the nature, type, dose and time medication was administered, but if you know your relative’s medication needs are more complex and require constant intervention and supervision, then look for every relevant entry where medication is mentioned and quote it in your written appeal submissions. This can be a painstaking and emotional task, but every entry in the notes and records, however minor, may help build a bigger picture of overall healthcare needs.

This is not a job that can be rushed, and can often take many days, if not weeks, to do the job properly and set out in detail where the CCG have omitted or incorrectly quoted entries from the multiple sources of records that may be available. It is then a matter of taking a holistic view and summarising those needs in conjunction with the 4 Key Indicators (Nature, Intensity, Complexity and Unpredictability).

So what’s the issue over timing?

When the updated National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care came into effect on 1st October 2018, the previous 6 month timescale for lodging an appeal disappeared. Paragraph 195 of the 2018 National Framework 2018, merely states:

“All CCGs must have an NHS Continuing Healthcare local resolution process. They should therefore develop, deliver and publish a local resolution process that is fair, transparent, includes timescales and takes account of the following guidelines…”

Many practitioners and CCGs alike, assumed that this sacrosanct provision from the previous 2012 National Framework had been incorporated into the updated 2018 National Framework. It hadn’t! This was the timescale both CCGs and those seeking NHS funding had always worked to and there is no reason to think that it would be removed when the 2018 National Framework came into force.

Some more sceptical might think that it was a deliberate omission, rather than a mere oversight. Without any prescriptive 6 month timescale, CCGs became at liberty to impose unilateral and arbitrary shorter timescales at will, some as short as 14 days, within which to lodge an appeal from an MDT assessment!

Miss the deadline and you risk losing your chance of appeal. One strike and you’re out! That could cost your relative thousands of pounds a month in care fees.

This condensed timescale has proven totally unrealistic and unfair to those family representatives appointed to prepare appeal submissions – and the CCGs know this. From our own experience, we have set out above a brief outline of the amount of work required to draft cogent appeal submissions.

The omission of the 6 month appeal deadline has until now given CCGs carte blanche immunity to impose a random abbreviated timescale of their choice, with impunity, and however unreasonable it may be; taking unfair advantage and pressurising families who are already at a point of despair whilst looking after their relative at home or in care.

Most CCGs have not been sympathetic to challenges over their self-imposed shortened timescales to appeal, as it is not in their interest to do so for ‘financial gatekeeping’ reasons. The omission of any mention of a timescale to appeal an MDT decision has lawfully enabled them to be as ‘ruthless’ and difficult as they want, at expense of families seeking to appeal an incorrect, flawed or perverse decision to refuse or withdraw NHS funding.

What’s the latest news?

It has now come to our attention that, only this week, the Department of Health and Social Care has confirmed that this 6 month appeal timescale has been reinstated. A good result for common sense!

So, if you disagree with the MDT’s rationale after a full assessment, you still have 6 months from their outcome decision to appeal to a Local Resolution Meeting (LRM). The LRM is conducted at local level by the Clinical Commissioning Group. Beware! Think of this first tier appeal as the CCG marking their own homework!

Remember, if you are unsuccessful at the LRM, you still have another opportunity to appeal to the next tier – NHS England. Again, a 6 month time limit applies to lodge your written appeal submissions. NHSE will conduct a full review and your appeal will be heard by an Independent Review Panel (IRP). This is effectively your last chance of appeal, so make sure you prepare your case well and don’t forget to lodge the appeal submissions in time! Search our website for more information about IRP appeals.

If all fails, the final chance of any appeal is to the Parliamentary and Health Service Ombudsman (PHSO). You have 12 months to lodge your appeal from the IRP outcome.  However, generally speaking, the PHSO will only investigate and overturn decisions where there has been an abuse of process, rather than an outcome which you do not agree with, however perverse, or aggrieved you feel. PHSO tend to look at whether the correct decision-making process was followed and not whether the decision itself is correct.

Conclusion

If your relative has been denied NHS Continuing Healthcare funding or it’s been withdrawn upon review, and it’s clear that, for example, the:

  • correct process wasn’t followed
  • assessors have not followed the National Framework guidelines or case law
  • eligibility criteria have not been properly applied
  • family representatives have been excluded from the process
  • there are no proper assessment notes
  • proper consent was not obtained to start with

…then you MUST appeal.

Don’t delay and leave it too late. Early preparation is essential and the key to success.

If you need help or want to discuss anything to do with your appeal visit our one-to-one page.

Read these helpful articles:

Rejected for CHC Funding? Part 1: How To Appeal The MDT Decision

Learning valuable lessons prior to your MDT Assessment and how to avoid pitfalls

Beware! Annual Reviews can lead to CHC Funded Care being withdrawn

Attending an Assessment or Independent Review Appeal?

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Getting through the Checklist assessment – avoid these common mistakes!

First, read our latest article “Understanding the Checklist Assessment”.

Here’s a quick recap…

The NHS Continuing Healthcare Checklist assessment is the first stage in the NHS Continuing Healthcare funding assessment process and simply determines whether the applicant should move on to a full assessment for NHS Continuing Healthcare funding.

This preliminary assessment stage should be relatively straightforward and quick. It is not intended to be a long drawn-out process. The Checklist screening tool can be completed by any health or social care professional who has been trained in its use. Prior to completing the Checklist, the professional must first ensure that appropriate consent has been obtained from the individual (if they have mental capacity) or their representative (holding Lasting Power of Attorney or else acting in their ‘best interests’).

There are 11 headings called ‘Care Domains i.e healthcare needs that are assessed and each one attracts a score of ‘A’, ‘B’ or ‘C’ (A is the highest, C is the lowest). The professional completing the Checklist will use their subjective judgment to score the appropriate level of need under each Domain. The outcome will determine whether the applicant is screened out of the process or can move on to the next stage and undergo a full assessment to see if they are for CHC funding.

However, many mistakes seem to be made at this Checklist stage by assessors, and it leads to people being screened out and then incorrectly means-tested, having to sell their home to pay for their care.

Check out these 11 common mistakes below…

If your relative needs full time care, it’s vital for you to read the NHS Continuing Healthcare assessment guidelines, so that you know what should and shouldn’t happen regarding funding.

A financial assessment (means-test) is NOT the first thing that should happen, and if your relative has been told they’re having a financial assessment – or they have been asked about their finances – be sure to tell the assessor that this is entirely inappropriate.

The first thing that should happen is an assessment of care needs, NOT money.

11 frequent mistakes with the NHS Continuing Healthcare Checklist assessment.

The following mistakes are all based on reports received from families:

1. Being told your care needs don’t warrant a Checklist assessment and/or that you can’t have one and/or and that you won’t be eligible.

Any individual can ask for a Checklist assessment.

If you’re told any one of the above things, it implies that the person telling you has already made up their mind about your relative’s care needs before the Checklist assessment has even taken place!

The whole point of the Checklist assessment is to see if there’s any chance they might need NHS Continuing Healthcare funding.

Also, the Checklist is not the actual assessment itself.  It’s simply an indicator of whether your relative might be entitled to have a full assessment to determine their eligibility for CHC funding (stage 2). So, unless your relative clearly falls into one of the 6 exceptions where a Checklist isn’t required, you should insist on the Checklist and don’t be fobbed off!

2. The assessor has no training in NHS Continuing Healthcare and in the use of the assessment forms.

Anyone undertaking an assessment at any stage of the NHS Continuing Healthcare assessment process must be properly trained in it. Don’t be afraid to ask what training the assessor has had in NHS Continuing Healthcare and what knowledge they have of The Care Act and of relevant case law, such as  The Coughlan case.

The assessor also has a duty to explain what NHS Continuing Healthcare is about, what happens if your relative meets the eligibility criteria and the need for ongoing reviews etc. If you don’t understand the process or are unsure what happens next, then don’t be afraid to say so!

3. You’re told the Checklist can only be completed in a care home.

This is incorrect. It can be completed in any setting, even in the patient’s own home.

However, if in a hospital setting, the National Framework provides it should only be completed once the “individual’s acute care and treatment has reached the stage where their needs on discharge are clear” ie they are medically or surgically fit for discharge and all acute treatment has been completed. (See Practice Guidance Note 18.1).

Furthermore, Practice Guidance Note 18.4 adds, “Checklists should not be completed too early in an individual’s hospital stay; this could provide an inaccurate portrayal of their needs as the individual could potentially make a further recovery. As far as possible the individual should be ready for safe discharge at the point that a Checklist (if required) is undertaken”.

4. You’re not informed about when it’s taking place and you’re not asked to contribute.

This is manifestly wrong and totally unacceptable! It seems many people are also not told afterwards about the outcome, nor given any paperwork or a copy of the completed Checklist, or even informed how to challenge a negative outcome it they disagree with the Checklist scores. The National Framework Guidelines make it very clear that an individual (or their representative) must be fully informed and involved at every stage of the process.

5. The assessor failed to look at how your relative’s care needs are changing.

Assessors must consider the ‘near future’ – how care needs are anticipated to change over the next few months, and this must be taken into account when scoring the Checklist.

6. The assessor makes your care needs fit the lowest score first.

If you look at pages 9-19 of the NHS Continuing Healthcare Checklist screening tool you’ll see that each Care Domain shows the lowest score (C) first. When completing the screening tool it is important that the assessor considers all the descriptors in each Care Domain. We’ve heard of instances where an assessor will look at the description of the lowest score first and see that the person’s care needs fit that description – but then fail to look at the higher scores. It means people may be given scores that are too low which could impact on their prospects of moving on to a full assessment. Be alert and ready to challenge the assessor and question why they have ruled out a higher score.

7. The Clinical Commissioning Group (CCG) throws out the Checklist saying there’s ‘not enough evidence’.

The bar to passing the Checklist assessment has been set deliberately low to ensure that individuals are not screened out of the assessment process prematurely, and so have an opportunity to be assessed for NHS Continuing Healthcare funding.

Much less evidence is needed for the initial Checklist than for a full assessment at the next stage of the assessment process. Paragraph 85 of the National Framework confirms that it is not necessary to provide detailed additional evidence when completing the Checklist and that a brief description of the level of need in each Care Domain and the source of supporting evidence used will suffice – see also paragraphs 97- 99 of the National Framework.

8. Assessors ignore the ‘well-managed needs’ principle.

As in the whole NHS Continuing Healthcare assessment process, assessors must look at the individual’s needs, not just the needs as they appear with care in place at that point in time. This is a very common mistake and leads to many incorrect funding decisions.

For more information, read our blog: Do you really understand the “Well-Managed Needs” argument? – 2018

9. Ignoring the Fast Track process.

The Checklist should only be used if it’s NOT appropriate to use the Fast Track Pathway Tool.  The Fast Track process should be carried out quickly for people who are in a period of rapid deterioration and at/or nearing end of life, to ensure that they receive a package of care in a timely manner without having to wait for a full assessment.

Read: How To Fast Track The Continuing Healthcare Funding Process

10. You pass the Checklist and the assessors tell you you’ll have to pay for care until stage 2 is completed.

The NHS Continuing Healthcare Checklist assessment is purely an indicator of whether a person needs a full assessment (stage 2). Therefore, at this point, no decision has been made about who is responsible for paying for care.

No individual who is new to the process i.e has not required a package of care previously, should have to start paying for their own care until CHC has been ruled out.

Alternatively, if an individual is already paying for their own package of care prior to the Checklist screening, then they will usually be expected to continue paying until a decision is made. If CHC is subsequently awarded, they may be entitled to a refund from the Clinical Commissioning Group.

Make sure you read the sections of the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (Revised October 2018) relating to the Checklist, particularly paragraph 105 which we have copied below for your attention:

“An individual should not be left without appropriate support while they await the outcome of the assessment and decision-making process.  A person only becomes eligible for NHS Continuing Healthcare once a decision on eligibility has been made by the CCG. Prior to that decision being made, any existing arrangements for the provision and funding of care should continue, unless there is an urgent need for adjustment. If, at the time of referral for an NHS Continuing Healthcare assessment, the individual is already receiving an ongoing care package (however funded) then those arrangements should continue until the CCG makes its decision on eligibility for NHS Continuing Healthcare, subject to any urgent adjustments needed to meet the changed needs of the individual. In considering such adjustments, local authorities and CCGs should have regard to the limitations of their statutory powers. For details on how refunding arrangements might apply in such situations please refer to annex E. 

11. You can’t have a full assessment because we haven’t ‘optimised’ your relative.

This is a more recent ruse introduced by some CCGs to delay moving individuals on to a full assessment even after a positive Checklist outcome!

‘Optimisation’ is an invented term used by some CCGs to artificially insert further healthcare assessments (eg for Dementia) prior to a full assessment. This intervening assessment might lead to the introduction of a new medical regime, which if successful, could result in reduced healthcare needs. The CCG can then argue that, with reduced (or ‘well-managed’) needs, a full assessment is no longer required and instead another Checklist should be undertaken. So, rather than passing automatically onto a full assessment, the individual may have to continue paying for their own care far longer than necessary.

To avoid this retrograde step happening to your relative, if you have a positive Checklist, insist that a full assessment takes place without delay!

Has your relative been “optimised?” NHS invent more delays to avoid CHC Funding…

What’s your experience with the Checklist process?

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Understanding the Checklist Assessment

If your relative has a ’primary health need’ i.e. the main purpose of their care is for health needs (as opposed to social care needs), then they may be eligible for NHS Continuing Healthcare Funding.

NHS Continuing Healthcare Funding (‘CHC’) is a package of fully-funded care, paid for by the NHS, and which is ’free at the point of need’. CHC is paid, regardless of the setting where the care takes place and irrespective of the recipient’s wealth (as it is not means–tested).

Without CHC funding, your relative may end up self-funding their care and paying for it out of private savings or even be forced to sell their home.

In order to be considered for CHC your relative will need to engage with the CHC assessment process to determine their eligibility for NHS funding.

Here are some quick Questions and Answers to help you:

What is the purpose of the Assessment?

The assessment process has 2 key objectives, namely to establish:

1) what  your relative’s care needs are (crucially, so that the right care is in place); and

2) whether that care is the legal responsibility of the NHS or the Local Authority to fund.

It should never be an assessment of your relative’s money, nor is it an assessment of Clinical Commissioning Groups’ (‘CCG’) budgets, or their willingness to pay.

When does the assessment process start?

The assessment process should ideally begin as soon as your relative needs full time care, or in any circumstance that would suggest they may be potentially eligibility for NHS Continuing Healthcare.  If it does not, they risk being means-tested and told to pay for their care before anyone has explored whether the NHS may have a duty to pay.

What is the Checklist?

The process to determine eligibility for CHC starts with an initial Checklist – a preliminary screening tool used by the NHS to help practitioners assess a basic level of need and determine whether an individual is eligible to move forward to a full assessment for NHS Continuing Healthcare Funding.

Families often get confused and wrongly believe that the Checklist is the actual final decision. It isn’t. It’s simply a process designed to screen out individuals who aren’t eligible for CHC funding and to enable those who may be, to move on to a full assessment.

Where do I begin?

Firstly, you need to establish whether an assessment (for NHS Continuing Healthcare) has already been carried out.

If it has, ask for a copy of the completed Checklist as you need to find out exactly what type of assessment took place. It may have in fact been a financial assessment to assess affordability to pay for care home fees, and not a Checklist assessment to determine eligibility for NHS Continuing Healthcare (remember, which is free).

WARNING! If your relative is already in a care facility and no assessment for CHC has been done, they could be paying thousands of pounds a month for their care unnecessarily!

Where does the Assessment take place?

The Checklist assessment used to take place in hospital, but that changed under new guidance in the revised edition of the National Framework for NHS Continuing Healthcare Funding and NHS–funded Nursing Care (2018).

Preferably, the Checklist assessment should now take place once the individual is back in their own environment or appropriate community care setting where they are going to be living i.e. back in their own home or at a care home facility. That way, a more accurate picture of their long-term healthcare needs and requirements can be obtained away from an acute hospital setting.

How do I start the assessment process?

If your relative is about to be discharged from hospital, ask your local Clinical Commissioning Group’s NHS Continuing Healthcare Department/Team to start the ball rolling and set up a Checklist assessment for your relative.

If they are going into a care home for the first time, you can ask the care home manager to arrange the Checklist assessment.

If they are living in their own home, you can ask their GP, therapist, social worker, community or district nurse to set up the Checklist assessment with the NHS.

If your relative is already paying care fees and you believe they may be eligible for NHS Continuing Healthcare, as above, you can ask a health or social care professional or care home manager to arrange an assessment.

How does the NHS arrange the Checklist assessment?

The CCG has a duty to carry out an assessment even if your relative is currently paying for their care out of private funds (self–funding).

As your relative’s representative, whether acting under a Lasting Power of Attorney or in their ‘best interests’, the CCG should contact you directly to advise you of the proposed appointment date for the Checklist assessment.

If your relative is living in a care home, then they may notify you of the appointment.

Can the NHS refuse to do the Checklist assessment?

Yes. There are circumstances set out in Paragraph 91 the National Framework where the NHS can refuse to carry out a Checklist assessment. These include the following:

  • Where it is plainly obvious that there are simply no health needs;
  • If the NHS considers the individual’s needs are so obvious that they should bypass the initial Checklist and move straight to a full assessment;
  • If the individual has a rapidly deteriorating condition and may be entering a terminal phase, in which case the Fast Track Pathway Tool should be used instead. Read, “How To Fast Track The Continuing Healthcare Funding Process.”
  • The individual is already receiving services under Section 117 of the Mental Health Act to meet their assessed needs.

Tip: If you feel that the NHS have wrongly declined to undertake a Checklist assessment, then you must complain immediately to the NHS Continuing Healthcare Department/Team.

Who attends the Checklist assessment from the NHS?

The CCG will appoint an assessor to carry out the initial Checklist assessment.

The assessor will be a health or social care practitioner such as: a registered nurse employed by the NHS, GP, other clinician or local authority staff such as a social worker, care manager or social care assistant.

They should be trained in the National Framework and using the Checklist Tool, and also been involved in assessing or reviewing individuals’ needs as part of their day-to-day work. They must understand how to apply the CHC eligibility criteria against the scoring system when carrying out the Checklist assessment.

Some CCGs will delegate completion of the Checklist to the care home or other organisation under an agreed protocol.

How much notice will I get of the Checklist taking place?

You have every right to be present at the Checklist assessment, so you should be given reasonable notice as you need time to prepare for the appointment.

However, sometimes, if an urgent decision is needed, the Checklist assessment can be arranged at short notice, which, understandably, may be inconvenient for you.

If so, ask for it to be postponed to a more convenient date, as ideally, you need to be there and be involved in the process.

Quite often, we hear from families that the Checklist assessment took place (behind their backs) without them or their relative being notified; or else, even if notified, were then excluded from being involved in the process. That is contrary to the National Framework which puts the person at the centre of the process.

If the Checklist assessment took place without your knowledge or involvement and your relative was not successful, then ask for it to be redone.

Do I have to be present At the Checklist Assessment?

In short, yes! It’s vital for you to attend.

Don’t let your relative be wrongly filtered out of the assessment process before it has even begun!

Whilst it is not a mandatory requirement, we strongly recommend that family representatives get involved and contribute to the assessment process.

You are best placed to know your relative’s healthcare and daily needs better than anyone. Use that advantage to explain their needs to the CCG assessor (who may be meeting your relative for the first time) and to ensure that the assessment process is conducted in a fair, open and transparent manner.

You must try and make every effort to be at this initial assessment in order to support your relative’s case for CHC funding and at least get on to the next rung of the ladder – which is a full assessment.

How do I prepare for the Checklist Assessment?

Good preparation and planning are essential at this stage of the assessment process.

We recommend that you go through the Checklist yourself and score your relative’s needs against the prescribed criteria/descriptions for each Care Domain. That way, you will know in your own mind whether the assessor’s scores are fair and can argue the case if you disagree with them and correct any misinformation they have.

A lack of preparation can prove costly and end up with your relative paying for their care!

Can I have someone to attend with me?

The National Framework provides that you are entitled to have any person you choose to be with you at the Checklist assessment, and they can also act as an advocate, take notes for you, be another pair of ‘eyes and ears’, or simply just be with you to give you encouragement and support.

You don’t have to fight this battle alone. For further reading buy our book “How To Get The NHS To Pay For Care”. If you need specialist advocacy support visit our one-to-one page.

What happens at the Checklist assessment?

The CCG’s appointed assessor will review your relative’s healthcare needs and score them against the Checklist.

The assessor will look at 11 main Care Domains, namely:

  1. Breathing*
  2. Nutrition – food and drink
  3. Continence
  4. Skin integrity (including tissue viability)
  5. Mobility
  6. Communication
  7. Psychological/emotional needs
  8. Cognition
  9. Behaviour*
  10. Drugs/medication/symptom control*
  11. Altered states of consciousness *

Each Care Domain is divided into 3 levels and scored A, B or C – with ‘A’ being the highest level of needs and ‘C’ being the lowest.

In order to pass on to the next stage i.e. to a full assessment, your relative will need to achieve a minimum aggregate score of:

  • 2 or more As
  • 5 or more Bs (or 1A and 4Bs), or
  • at least one A in a domain with an asterisk*

How long do I have to wait for the Checklist outcome?

The Checklist will usually be completed within 14 days from the date of request.

Paragraph 100 of the National Framework states that whatever the outcome of the Checklist, it should be communicated clearly and in writing to the individual or their representative as soon as “reasonably practical”.

So, if you do not receive any communication from the CCG within 14 days of the assessment, then we recommend you contact them to chase their outcome decision.

What are the possible outcomes of the Checklist assessment?

There are 2 possible outcomes:

  • A negative Checklist; or
  • A positive Checklist

Let’s explore both scenarios below.

What happens if the Checklist is positive?

As above, you should be notified of the successful outcome in writing and be given a copy of the Checklist and reasons for the outcome decision (usually contained within the Checklist).

Your relative will now be passed on to a full assessment which is carried out by a Multi-Disciplinary Team (MDT).

Important! A positive Checklist does not necessarily mean that your relative will be found eligible for CHC funding at the MDT stage. Indeed, many applications are turned down (whether correctly or incorrectly) by the MDT assessors.

Keep the Checklist outcome handy as it may become a useful comparator in due course if your relative is reassessed and CHC funding is subsequently withdrawn.

What happens if the Checklist is negative?

As above, you should be given a copy of the Checklist with written reasons for that negative outcome decision, together with information about how to ask the CCG to reconsider their decision (ie complain!).

Beware! You have 12 months to challenge the outcome and to lodge your complaint.

When reviewing the matter, the CCG should take into account all the information available at the assessment and any additional information that is supplied. However, according to Paragraph 102 of the National Framework, the CCG are not obliged to undertake a further Checklist.

You must adhere to the timescales to challenge the outcome, otherwise you may be stuck with it (even if it’s blatantly wrong).

According to Paragraph 85 of the National Framework, the threshold for passing on to a full assessment “has intentionally been set low, in order to ensure that all those who require a full assessment of eligibility have this opportunity.”

Therefore, a negative outcome suggests that your relative’s healthcare needs are not considered sufficiently high enough to pass forward to a full assessment at an MDT meeting.

If you don’t agree with the outcome, or there has been an abuse of process (eg you weren’t included), you can request another Checklist assessment. Contact the local NHS Continuing Healthcare Department/Team in writing, stating your reasons and insist that you would like the Checklist to be repeated.

Keep the Checklist safe.  Even if your relative doesn’t qualify, it may still prove a useful exercise and give you peace of mind that their healthcare needs have been properly assessed and are not at a sufficiently high level to trigger a full assessment.

It may also become a useful benchmark for comparison purposes should their needs change (increase) and a further reassessment is required in due course.

When can I request another Checklist Assessment?

If you believe that the Checklist has been completed incorrectly, or the process was not carried out robustly, complain and insist that the Assessment be repeated.

If your relative’s healthcare needs change or fluctuate as time goes by, you can always request that another Checklist assessment is carried out, as and when appropriate.

Alternatively, if the change in needs clearly warrants it, a decision could be made to bypass the Checklist and go straight to full assessment for CHC.

Summary

Remember, the Checklist assessment is just a preliminary screening tool to see if a full assessment is required. It is not the actual assessment for eligibility for CHC itself.

Share your experiences of a Checklist assessment below and help others avoid any pitfalls you have encountered…

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Paying care home fees or paying for full-time care at home? You could be entitled to NHS Continuing Healthcare.

Many people assume that if you have some savings or own a property, you have to pay for your own care, but this is not always the case.

How reliable is the information you have?

Did you know that the NHS is obliged to pay 100% of your care home fees if you have a ‘Primary Health Need’. This means that your primary need for care is a health need – as opposed to a social care need. This funding is called NHS Continuing Healthcare (or ‘CHC’ for short) and it’s FREE!

However, many of the families who contact us say that they’ve not received any accurate information about this from the health and social care authorities.

Looking back into our archives, we came across this BBC article about NHS Continuing Healthcare entitled, “The little-known fund that can cover complex care costs.” The article is still as relevant today as it was when published on 7th November 2014.  Read how more than one million people in the UK have had to sell their homes to pay for their care or a relative’s care. Just think how many more thousands of homes have been sold since then!

The National scandal continues, and nothing seems to have changed since 2014! If anything, from what our readers comment, the NHS are finding even more ways to put families off seeking their entitlement to CHC Funding. Thankfully, BBC’s Victoria Derbyshire Programme delved into this scandal again more recently, and highlighted the hurdles and difficulties that some families have faced whilst battling the NHS to obtain CHC Funding for their relative.

Inordinate delays, disseminating incorrect information, failing to adhere to the National Framework for NHS Continuing Healthcare Funding, missing prescribed timescales, conducting assessments that are neither fair nor robust, incorrectly removing vital CHC Funding at reassessments, and generally bamboozling families engaged in the CHC assessment or appeal process – are just some of the concerns raised by families who contact us. No wonder so many give up and end up paying for their relative’s care unnecessarily!

For more information on some of the recent NHS behaviours that we’ve uncovered, read:

Help Care To Be Different to spread the word and raise public awareness of the availability of CHC Funding nationwide, so others are better informed about how to get funding for their relative.

If you’re new to NHS Continuing Healthcare and the assessment process, here’s a really helpful article to get you started: New to NHS Continuing Healthcare Funding? Here’s a guide to the basics you need to know…

There are two types of nursing care funding:

  1. Fully-funded NHS care is called NHS Continuing Healthcare. This covers 100% of care fees, including accommodation.
  2. Funded Nursing Care (FNC) is a weekly allowance (previously £158.16, but recently increased to £165.56 from April 2019) paid by the NHS as a contribution specifically to cover the cost of nursing care (only) provided by a registered nurse in a nursing home facility. FNC is paid tax-free and is not means-tested.

Remember: You should ALWAYS be assessed for NHS Continuing Healthcare BEFORE you’re assessed for FNC.

Have a look at our blog: Have you considered NHS-Funded Nursing Care (FNC)?

Cutting through the confusion

Family representatives are often confused between the fine dividing line over social care vs healthcare. Understanding the difference is critical in terms of who funds the cost of care.

Generally speaking, in simple terms:

  • Social Services (your Local Authority) provides social care – which is means-tested – so your relative may be required to contribute to some or all of the cost of their care depending on the level of their assets and savings
  • The NHS provides health/nursing care – which is not means-tested -and is free at the point of need

Unfortunately, most families don’t really understand the difference between social needs and healthcare needs, and so, often wrongly assume that their relative’s needs must be healthcare needs (because how else could they survive), when in fact they’re entirely social needs (or even, perhaps, a combination of both).

Although there is no definition of social care needs, it is often thought of as needing help with ‘activities of daily living’ or assisting someone to maintain social interaction and their independence, or preventing them from coming to harm in vulnerable situations. For example, getting help with dressing, mobility, washing, feeding and toileting etc.

If your relative has health needs then make sure that any ‘assessment’, is an assessment to determine eligibility for NHS Continuing Healthcare (ie free care) and conducted in accordance with the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (revised October 2018), and not a Local Authority financial assessment which is means-tested (and could result in your relative self-funding all of their care).

Beware: Don’t get caught in the middle. Even when healthcare needs may be obvious, the NHS might still try to push you down the Local Authority route for financial assessment just to save funds coming out their budget, and vice versa! If your relative has a Primary Health Need, insist on a CHC assessment!

How to get the NHS to pay for care

Having to choose a care home, negotiate the care ‘system’, understand care fees and figure out what to do next can be very difficult, and many families feel confused and exasperated.

Care To Be Different can help by showing you what should and shouldn’t happen.

How To Get The NHS To Pay For Care is an easy-to-follow, practical e-book (now also available in handy paperback) that helps you cut through the confusion and claim what you’re entitled to.

“We have heard today that my mother-in-law is to receive NHS Continuing Care funding. We could not have done it without your book and website. Thank you so much.”  Ian Johnson

“Everything you said would happen did happen.” (further feedback on How To Get The NHS To Pay For Care)

Julia C, “Yesterday I received notification that my CHC application for my relative has been successful. I bought and studied your excellent book before the MDT. Without this, I am sure the outcome would have been different. It was invaluable, many thanks.”

Michelle Wetherall, “Yet another excellent article from CTBD. Thank you! Without this website I would have struggled for information and support during the appeal process for my late father.”

Please help us to spread the word, as much more still needs to be done to help families secure this vital source of NHS funding where it is rightfully due!

 

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